Forgotten Citizens Disparity in Health Care: Inadequate Formal Nursing Preparation on Issues of Routine Cancer Screening for Women with Developmental Disabilities

Shelley Grant Moriston, PsyD Participating Investigators: Morag Walden, MS, RN, CNS, C, CDDN; Rosemarie Vasquez, BSN, RN; Steven Wallace, RN; Jeanne Nivens, RN, MPH; Tammy Harvey, BSN, RN; and Wade Moriston, BA

Abstract

As the health services and supports provided to women with developmental disabilities (DD) are being transitioned from intermediate care facilities (ICF/MR) and ICF group homes to home and community-based waiver services, routine cancer screening for women's health risks are being overlooked by inadequately prepared community-based developmental disabilities nurses and unskilled and unlicensed direct care staff. Primary care providers and nurses with little or no experience in the field of DD have a significantly greater lack of expertise in developmental disabilities and are frequently not performing, prescribing, or advocating for routine cancer screening and basic health needs of this at risk population. Community clinics, medical offices, and community health staff are often ill equipped to meet the adaptive needs of women with a DD who also have physical disabilities. Community clinics and medical offices often have small examination rooms that are not designed to accommodate wheelchairs and examination tables too high to transfer a person from a wheelchair to the table, making proper examination of women with physical disabilities problematic.

After completing an integrative review of professional literature, the author concluded that routine screening for cancer and healthcare issues that impact women in the general public are not being adequately afforded to women with developmental disabilities living at home and in community-based programs, and the subject has only been addressed to a very limited degree in professional nursing research. A significant gap in the professional literature regarding routine wellness monitoring statistics in the community, particularly to women over the age of 50, was identified. Additionally, there is significant evidence to suggest that nurses are not properly prepared in their formal nursing education or by their employers¹ to address specific needs of the developmentally disabled, particularly issues of women's health. A survey designed to assess the formal educational preparation and employer educational preparation provided to working community-based developmental disabilities nurses was conducted.

Keywords: developmental disabilities , Women's health , preventative care , inadequate nursing education , disparity in health care

INTRODUCTION

Across the nation services to the developmentally disabled (DD) are transitioning from facility-based to community-based², and with that transition continuity of health monitoring is becoming a thing of the past^{3, 4}. Although not all programs offer nursing services, individuals with disabilities who have nursing as part of their community service often receive care from nurses who have not been adequately prepared to work with the DD population^{5, 6, 7}. Those nurses who have had some formal DD training report that their training did not address an aging⁸, predominantly female, DD population. Rather than having a primary care physician and nurses who have worked with the person with disabilities for many years and are knowledgeable about the specific needs of the population, many people with disabilities are at the mercy of community health providers that accept Medicaid and are willing to take on the challenges associated with treating this vulnerable population⁹. Often the DD population is forced to receive health services from clinics that have rotating health care providers; they rarely have the continuity associated with a single primary care practitioner (PCP)¹⁰. Those that do have a stable PCP frequently have a practitioner who knows very little about the DD population^{11, 12, 13}. A growing concern is that routine cancer screening, particularly for women in the DD population, is falling by the wayside¹⁴. Because of a general assumption that people with disabilities are not sexually active¹⁵, women are often perceived as being at low risk for breast and cervical cancers, and routine prevention guidelines are often not followed^{16, 17, 18}.

The hypothesis for this research project is: "Does a lack of formal nursing preparation in the field of developmental disabilities for community-based nurses impact their ability to properly advocate for cancer screening and screening of women's health issues in the DD population?" A survey of formal nursing education will be conducted and compared against published literature relative to the cancer screening provided to an aging female DD population. It is anticipated that a causal effect of inadequate and inconsistent routine monitoring in this subgroup will be found due to inadequate DD nurse preparation. The two variables being reviewed in this study are self-perceived formal nursing preparation by schools of nursing or DD employer and frequency of cancer screening in women with a DD over the age of 50 years living in the community.

REVIEW OF EXISTING LITERATURE

A review of existing professional literature from 1989 to 2007 was conducted. Search terms included: mental retardation, developmental disabilities, intellectual disabilities, elderly developmentally delayed, women with developmental disabilities, cancer screening in developmental disabilities, and community-based services and developmental disabilities. Though the professional literature review revealed health disparities in wellness monitoring in many areas, this search was limited to cancer screening. Articles were included in this review if they contained information regarding disparities in routine wellness monitoring for people with developmental disabilities, particularly as they related to cancer screening. A total of 64 articles were found to address disparities in health care to people with developmental disabilities living in the community. The articles were divided into two categories: (1) developmental disabilities disparity in health care general and (2) developmental disabilities disparity in health and wellness women and cancer screening specific. Forty of the included articles were from the first category (general) and 24 were from the second category (women and cancer screening specific).

The American Cancer Society recommends that all women should begin having Pap tests within 3 years of becoming sexually active, and all should have their first Pap test no later than their 21^st birthday. The testing should be conducted annually until age 30 unless the liquid-based test is performed, and then the test can be done every other year. After age 30, if three consecutive Pap tests have been negative, the test can be done once every 2-3 years. It is recommended that women who are at increased risk have the test annually regardless of age. Those who are over the age of 70 years may stop having the Pap test unless they are at high risk. If the individual has had a hysterectomy with removal of the cervix, she may choose not to continue being tested. If the cervix is still intact, the test should be performed as recommended. There is no exclusion of women with DD from the routine wellness monitoring guidelines published by the American Cancer Society.

Current research at the Baylor College of Medicine¹⁹ reveals that 24% of all women in the U.S. have some sort of disability, with that number increasing annually as the U.S. population ages. The Centers for Disease Control and Prevention²⁰ estimates that the total number of women in the U.S. having disabilities is currently 19.9 to 28.6 million. People with developmental disabilities are living longer than in previous decades, and women are living longer than men, resulting in a marked increase in the number of women with developmental disabilities age 50 or older. Women who do not have a developmental disability have a life expectancy of approximately 79 years, while women with developmental disabilities, excluding those diagnosed with Down syndrome, have an average lifespan of 67 years. Women who are diagnosed with Down syndrome have an average life expectancy of 57 years²¹.

According to the American Cancer Society²² nearly one and a half million new cases of cancer are expected to be diagnosed this year. Nearly 80% of cancer diagnoses are assigned to people who are age 55 or older. While approximately 5% of cancers have a hereditary link, the majority of cases are the result of damage or mutation of genes across the lifespan. The National Institute of Health estimated the total cost for healthcare in the U.S. related to cancer last year to be $206.3 billion. The American Cancer Society estimates nearly 179,000 new breast cancer diagnoses will be made this year and that just over 40,000 of those will die from the disease. The estimates for uterine and cervical cancer include over 11,000 new cases and nearly 4,000 deaths as a result. Breast cancer is the most common type of cancer affecting women and 85% of those cases are ductal carcinoma in situ (DCIS). Breast cancer is the second leading cause of cancer death in women after lung cancer. Women with developmental disabilities are just as likely, and in the case of breast cancer more likely, to develop cancer as women in the general population but are less likely to have routine cancer screening^23-26.

The Centers for Disease Control and Prevention reports that women with disabilities are just as likely to develop cancer as the non-disabled population. Yet women with disabilities are much less likely to have routine mammograms, Pap tests, and pelvic exams. When they do receive breast and gynecological examinations, they face many barriers that non-disabled women do not face, such as transportation to the clinic, physical limitations that make undressing difficult, difficulty getting onto and off of an examination table, lack of knowledge of family and personal medical history, communication barriers, and limitations related to utilizing a wheelchair. With the transition to community-based services, there is often not a properly prepared nurse in the support circle who can communicate health concerns with the PCP or the gynecologist²⁷. For cost-containment reasons, many community providers rely solely on the natural supports of the community for health needs and have very limited, if any, nursing staff²⁸. Still others use practical or vocational nurses rather than registered nurses to manage costs. A key reason identified in the literature review that women with developmental disabilities are less likely to have routine cancer screening is a lack of awareness of actual risks on the part of families, providers, and employees. Community health clinics and community health providers are not adequately trained on how to accommodate the needs of and how to communicate effectively with women who have developmental disabilities^{29, 30}. There are many women who have DD who use adaptive communication devices and communication dictionaries that general health care providers are unfamiliar with and may not know how to use for effective communication with the individual.

Hormone replacement therapy (HRT) and hormone-based contraceptives (HBC) are used frequently with women who have developmental disabilities. Clinicians, providers, and families often see HBCs as a way to avoid the discomfort associated with a menstrual cycle and the burden of having to manage the actual menses itself. HBCs come in pills, patches, gels, vaginal rings, and injections. There is evidence to suggest that HBCs may be related to some forms of breast and uterine cancer. There are risks associated with HBCs that specifically impact the field of developmental disabilities. According to Brown & Murphy, researchers from the Association of Retarded Citizens (ARC), people with limited mobility taking HBCs are at greater risk for developing blood clots, and women who take anticonvulsants may be limiting the effectiveness of the HRT or HBC they are receiving. Still another risk to women who are developmentally disabled is that many of them do not know their family history of cancer, therefore their hereditary risks are unknown. The majority of women with DD will never have children and are, therefore, inherently at greater risk of developing breast cancer.

Women with disabilities should be taught to perform self-breast exams on a monthly basis, and their care providers should be properly trained to assist them. Direct care staff and people who provide assistance to women with DD in showering and dressing should be instructed to observe for changes in breast tissue such as discoloration of the skin, visible masses, tenderness, or discharge from the nipples. A complete breast exam by a medical professional should be performed at least annually. The American Cancer Society states that physical examination of the breast alone is not the best approach to detecting breast cancers since cancers that are large enough to be palpated are more likely to have already spread to surrounding tissues, while ones that can be detected with mammography are usually much smaller and still contained within the breast tissue. The earlier breast cancer is detected, the more likely that treatment will be effective. Brown & Murphy report that once a woman is over the age of 40 years, she should have a mammogram every year. If she chooses not to have the examination annually, she should have it at least every other year and increase it to annually once she reaches the age of 50 years. They contend that these standards are equally applicable to women with DD as they are to women who do not have DD. It is suggested that women who are not taking an HRT or HBC have a pelvic exam at least every other year and a Pap test every 3-5 years. If a woman is taking an HRT or HBC, she should have a pelvic annually and a Pap test every 2-3 years. In instances where a woman with DD is unable or unwilling to cooperate with a traditional Pap test, alternative methods such as using a sterile-tipped applicator to obtain a scraping have been effectively employed and should be considered. Women with developmental disabilities, families, and care providers should be taught unusual symptoms to watch for, including spotting, bleeding, clots, staining, heavier flows than normal, and bleeding that occurs postmenopausal as these are all indicators that a problem may exist. Unfortunately, cervical pre-cancers and early stages of cancer are often asymptomatic, and by the time visible vaginal bleeding or discharge is noted the cancer has become invasive and already affected surrounding tissues. Women with DD who are able to toilet themselves do not always detect or report changes in vaginal discharge to the care provider who is doing routine screening rather than testing in the presence of reported, potentially more critical, symptoms. Cervical cancer death rates are considerably higher in populations that do not have routine Pap tests. According to the American Cancer Society, when women who do not have routine Pap tests are diagnosed, they are generally already in the invasive late stage of cancer. The need to promote routine cancer screening for women with DD is clear.

A leading cause of cervical cancer is the human pappilomavirus (HPV). HPV is the leading sexually transmitted disease (STD) in Canada and is rapidly becoming so in the U.S.³¹ The best way for women to avoid getting HPV is not to have sex at all. But, people with developmental disabilities are often undereducated regarding safe sex practices, are often not willing participants in sexual acts, and may be at a significantly greater risk for infection than had been previously thought³². Many people who develop HPV are asymptomatic during the short period it takes to recover from the infection and may unknowingly spread the virus. A small percentage of people never recover from it. Condoms, according to the American Cancer Society, even if used completely correctly and during every single sexual contact, are still only 70% effective in preventing the spread of HPV since the infected tissues may not be completely covered by the condom. Gardisil, a vaccine to prevent infection of HPV, has been approved by the Food and Drug Administration. It is recommended that the vaccine be given to women prior to their first sexual encounter. The recommended age range for vaccination is 9 years to 26 years of age; women over age 26 are assumed to have already been sexually active and have risked exposure. There are forms of HPV that the vaccine does not protect against; therefore women who have received the vaccine should not stop using condoms and other safe sex measures. Routine wellness monitoring, including Pap tests, is still necessary. There is a need to educate women with DD and their care providers about HPV and ways to avoid becoming infected. DD nurses should advocate that the women they support be given information about Gardisil, including its possible side effects, in a format the women can understand and that they be afforded the opportunity to receive the vaccine after being adequately informed.

Developmental disabilities nurses have a responsibility to advocate for the women they work with to ensure they are receiving appropriate cancer screening to include mammograms, pelvic exams, and Pap tests. Additionally, efforts should be made to obtain familial histories regarding cancer. A risk assessment can and should be done on all women with developmental disabilities living in the community to identify who is at increased risk. It should never be assumed that a woman is not sexually active, no matter what her level of disability. Many people with disabilities are engaged in sexual activity against their will as evidenced by the many substantiated reports of sexual abuse in this vulnerable population. Often people with disabilities who are sexually exploited and abused do not even know that abuse has occurred, and if they do know, they are afraid to tell anyone³³. The risk for sexual abuse of the developmentally disabled is extremely high³⁴ and increases exponentially as services are moved to home- and community-based models, particularly if the individual is living in the home of her service provider, such as a foster home, host home, home-based, or a board and care model. In these models the abuser is often the provider of services and the abuse, therefore, goes unreported. If the woman reports the abuse, there is no one to corroborate her story and the charge is often dismissed without even being investigated. In many cases the woman is assumed not to be a credible witness simply because she has a developmental disability. A person who has not been believed is unlikely to attempt to report future instances of abuse. Research has shown that as many as 90% of people with developmental disabilities may be sexually assaulted at least once in their lifetime, while 49% may be sexually perpetrated against 10 or more times in their lifetime . The attackers are not always strangers or even primary caregivers. Fifteen to 25% of people with developmental disabilities who are sexually assaulted are attacked by family members, and another 15% of their assailants are friends of the family³⁶. The assaults are often masked by not calling them what they are. Rather than saying "rape" or "sexual assault," reports use less offensive terms such as "abuse" or "administrative infraction"³⁷.

METHODS

Because no published data could be found that specifically measured nurses' formal preparation for working with an aging, predominantly female DD population in the community, the Developmental Disabilities Nursing Formal Educational Preparation Survey was developed. The survey was developed through assimilation of elements found in the literature review and expert DD nursing review and feedback. Eleven questions were developed to measure formal nursing preparation provided in nursing programs and by DD employers. The survey contains a demographic component to identify nursing education level, nursing licensure level, and location of nursing preparation by state. An additional component identifies whether formal nursing preparation and later employer preparation provided training on developmental disabilities and, more specifically, women's health issues in the area of DD. A second section was incorporated into the survey for the respondent to make recommendation for formalized nursing preparation regarding DD and women's health issues by schools of nursing and by DD employers. The survey tool was submitted to Morag Walden, MS,RN,C, CDDN,CNS, an advanced practice nurse in the field of community-based services to the developmentally disabled. Mrs. Walden, who is certified in both gerontology and developmental disabilities, reviewed the survey tool for clarity, content, and validity prior to pilot testing. The tool was modified based on her recommendations prior to being presented to a panel of five professional DD nurses and one DD professional who is not a nurse, to review as an informal institutional review board (IRB). When the IRB determined that the tool protected the identities of the subjects being questioned and that appropriate safeguards were in place to ensure that participants clearly understood that participation was voluntary and there was no risk of negative action for choosing to participate or not to participate, the tool was distributed.

The survey was disseminated electronically to seven community-based DD nurses who collectively provide nursing oversight to services being provided in more than 30 states. They disseminated the survey to working nurses they supervise as well as to working DD nurses who are not employed with the same employer but are known through casual relationships. Each survey included a letter of introduction, a demographic survey, and a recommendation for change survey. The purpose of the study was clearly explained, the assurance of anonymity of survey participants was assured, and it was clearly stated that participation was completely voluntary. Participants were assured that they had no personal risks associated with participation and that by volunteering to participate they were helping to expand the general knowledge in the field of DD nursing. All research findings have been presented in a manner that do not allow for identification of participants within the sample. The survey responses were received electronically, by facsimile, and by mail. Simply by the act of returning the completed survey the consent of participants to use the data is inherently implied and assumed.

This study is a correlation study seeking to determine whether nursing preparation by nursing education programs and by DD employers prepares nurses in the community to monitor and advocate for appropriate wellness monitoring for an aging female DD population. Using a stratified random sampling, nurse participants were divided into five categories of licensure and seven categories of formal nursing education. The five categories of licensure were Licensed Psychiatric Technician (LPT); Licensed Practical/Vocational Nurse (LPN/LVN); Registered Nurse (RN); Clinical Nurse Specialist (CNS); and Nurse Practitioner (NP). The seven categories of formal nursing education measured were LPT preparation; LPN/LVN preparation; Associate Degree Nursing (ADN) preparation; Diploma; Bachelor's Degree Nursing (BSN) preparation; Master's Degree Nursing (MSN) preparation; and Doctoral Degree Nursing (DScN/PhD) preparation (Table 1.). The survey questions were a combination of checklists, yes/no responses, and essay response.

Surveys were reviewed for completeness prior to being incorporated into the study. Data was collected for a period of two weeks from February 5, 2007, to February 19, 2007. A random sample was provided to seven community-based nurses to distribute to currently practicing DD nurses who worked in community-based services to the DD population in over 30 states. The total number of surveys actually sent out was 62. The total number of completed surveys returned was 46.

The completed surveys were reviewed for completeness. Several surveys had a missing response to only one question, but otherwise the surveys were complete. Therefore, none of the submitted surveys were rejected for this study. Where possible, the one absent response was incorporated into the survey findings. The data has been summarized using descriptive statistics where appropriate.

RESULTS

There were 46 completed surveys returned to the investigator. Nurses were asked to include all levels of nursing licensure and nursing education obtained. Also, some responses were "yes" for one level of licensure and "no" for another. This resulted in some respondents being counted more than once on some survey criteria. For example, a nurse may have reported receiving MR/DD training in his or her LPT program but not in his or her nursing program after going back to school to become an LPN/LVN/RN. The majority of the respondents were LPN/LVNs (25 respondents); RNs comprised the next largest group (23 respondents). There were two LPT responses, two responses from CNS, and one from a NP. The majority of the RN respondents were trained at the Associate Degree in nursing level (29 respondents); nine responses were from Bachelor's Degree in nursing level respondents (Table 2.). Thirty-nine respondents report receiving no MR/DD training at all in their nursing curriculum(s) (Table 3.). The two LPT respondents reported having MR/DD training as a key element in their training program. One LVN from California reported having completed a psychiatric rotation clinical experience at an intermediate care facility for the mentally retarded (ICF/MR) operated by the State that included training on MR/DD. The remaining four respondents reported very brief review of MR/DD in their nursing program; all four were RNs. Forty-one of the respondents self-reported that they felt they had received inadequate formal nursing preparation to work specifically with the MR/DD population prior to going to work in the field (Table 5.). Thirty-five of the respondents self-reported that they did not believe they had adequate MR/DD training for working with the DD population, particularly women with DD, prior to assuming their position as a community-based DD nurse. Employer DD-specific training was provided to 31 respondents (Table 7.). Interestingly enough, many of the respondents reported, without prompt, being certified as developmental disabilities nurses. Several of the respondents hand wrote additional information on their survey that they had received "some" training by their employer on basics of developmental disabilities but not any on women's health issues in the field of DD.

The survey respondents reported obtaining their education from a total of 16 different states including: Alabama, California, Colorado, Florida, Georgia, Indiana, Iowa, Kansas, New York, Ohio, Pennsylvania, South Carolina, Tennessee, Texas, Virginia, and Washington (Table 6.). Additionally, one respondent received training to be a nurse in Indonesia and 20 respondents reported receiving their training in the Philippines; 10 are currently licensed as RNs and 10 as LVNs. All of the nurse respondents who trained outside of the U.S. are currently in practice in California. It should be noted that none of the foreign-trained nurses reported having any DD training. Filipino people associate shame with mental illness and mental retardation and avoid discussing it or making it known that a family member has it. It is believed in the Filipino culture that MI/MR are hereditary conditions.³⁸

The questions asked on the Developmental Disabilities Nursing Formal Educational Preparation Survey were: (1) What nursing license(s) have you held past or present? (2) What nursing programs have you completed or partially completed? (3) In what state(s) did you complete your nursing training? (4) Did your nursing education program(s) offer formal courses on DD/ID/MR? Was any of the training you received specific to women's health in the field of DD? (5) Do you feel that your nursing education program(s) adequately prepared you to be a DD nurse? (6) How long have you worked as a DD nurse? (7) When you first entered the field of DD, were you given formal training on DD prior to beginning your job? (8) Do you feel that your employer adequately prepared you to be a DD nurse?

The questions asked on the Recommendations for Change Survey were: (1) Do you think that developmental disabilities nursing requires a different or specialized body of knowledge from other areas of nursing? (2) Do you think that formal nursing education programs should offer a course(s) on developmental disabilities nursing? (3) Do you think that DD employers should offer DD training to newly hired nurses prior to their beginning to work with the DD population?

Table 7. MR/DD Training Provided Nurses Prior to Starting Work as DD Nurse (n=46)

MR/DD by Employer	N	%
Employer provided MR/DD before Working	29	63%
Employer did not provide MR/DD Training	14	30.4%
Received MR/DD but before becoming Nurse	2	4.3%
No Response	1	2.2%

There was a considerable degree of variance in the length of time the respondents have worked as a practicing DD nurse. Two respondents have worked in the DD field for less than one year; 11 for one to three years; four for four to seven years; and 17 for 10 years or more. The average years of DD nursing experience was 8.8. The median score for years of experience in the field was six, the variance 42.16, and the standard deviation 6.493073. Of the 17 respondents with more than 10 years of DD nursing experience, 14 reported not receiving any formal training on developmental disabilities, no training on women's health issues as they relate to developmental disabilities, and they all reported feeling inadequately prepared to be a DD nurse with the nursing preparation they had received. One respondent from California who is currently an LVN reported having received adequate training on developmental disabilities and women's health issues in the field of DD but not in her/his nursing program. The respondent received the DD education in an LPT program prior to becoming an LVN. There was one LPT respondent from California with more than 10 years DD experience who reported receiving adequate training on DD in her/his training program. Finally, there was one LPN respondent from Ohio who reported receiving "limited" training on DD in her/his nursing program. None of the 21 foreign nurse graduates reported receiving any training on DD in their nursing curriculums.

DISCUSSION

There are specific needs and adaptations that DD nurses must facilitate to meet the nationally accepted American Cancer Society cancer screening schedules for the women they support. These MR/DD specifics are not generally included in standard nursing curriculums but generally are included in LPT curriculums. The American Cancer Society has issued recommendations on ways to improve the accuracy of the Pap test. Nurses working in the field of developmental disabilities should consider these guidelines when assisting the women they support to schedule a gynecologic exam and prepare for whatever adaptations will be needed to meet the guidelines. Appointments should not be scheduled during the menstrual period. Douching and sexual intercourse should not be performed within the 48-hour period prior to the exam. Vaginal medications, creams, and tampons should not be used for two days prior to the exam. Pap tests, pelvic exams, and mammograms are not comfortable procedures for anyone. They may be even more uncomfortable for the developmentally disabled due to a general lack of sexual activity, a smaller introitus, and a lack of the ability to fully understand the procedure. Often times, a smaller speculum can be used to make pelvic exams and Pap tests less uncomfortable. The developmental disabilities nurse should consider that the individual who does not understand what is happening due to a cognitive impairment could perceive the procedure to be an assault. The nurse can work with the interdisciplinary team to develop a desensitization program and consider options for pre-sedation before procedures that may be uncomfortable. If multiple procedures are needed, they often can be scheduled at the same time to allow for complete sedation through an outpatient arrangement with a local hospital, thus reducing the frequency of sedation needs. Because standard nursing curriculums and MR/DD providers do not generally provide DD nurses with MR/DD training prior to assuming their role, DD nurses must take it upon themselves to learn how to meet adaptation needs of their female DD clients to ensure that routine wellness monitoring is occurring just as it is recommended for the general population.

IMPLICATIONS FOR NURSING

As people with developmental disabilities are being moved to community-based service models, professionals in the field, particularly DD nurses, must ensure that they are advocating for safeguards and appropriate services for an aging female population. Many health care providers that take Medicaid patients are forced to make up their losses in revenue by increasing the volume of clients they see. Therefore, routine examinations and screenings are often deferred due to heavy patient caseloads and a lack of time. The deferred tests are rarely referred to a specialist, such as a gynecologist, for follow-up. Some women with developmental disabilities take longer to treat than women in the general population because of physical limitations, cognitive impairment, and even behavioral challenges. Yet very little education is provided to the medical community regarding the medical care of women with developmental disabilities. It is becoming more and more critical that developmental disabilities nurses advocate for complete and appropriate services for the women they serve. One great way for DD nurses to educate health care providers on specialized needs of the DD population is to volunteer to speak to students at schools of nursing and at inservices at local hospitals and clinics. Sharing examples of effective communication techniques with someone who has a cognitive impairment is an excellent way to improve the communication between people with DD and their health care providers. Arguably, there is an even greater need for advanced practice nurses and baccalaureate or higher degree-prepared nurses to develop learning opportunities for the RNs, LPN/LVNs, and LPTs who are being employed as community DD nurses. Often, employers in the field of DD employ nurses with lower levels of education and licensure as a cost-saving measure. Professional nurses need to work with these employers and agencies and advocate for additional training on the care of people with DD for underprepared nurses. It is also very important for developmental disabilities nurses to get involved with their clients' interdisciplinary team (IDT) and teach non-licensed team members the risks and importance of cancer screening for women with developmental disabilities. Women with DD are much more likely to get the services they need and have their wellness monitored if health needs are agreed upon among IDT members. Further, nurses cannot be afraid to challenge community physicians and community nurses when they defer pelvic exams and do not order Pap tests and mammograms.

LIMITATIONS AND CONCLUSIONS

This review of the literature exposed a significant gap in statistical data published on routine cancer screening in women with developmental disabilities living in community-based service models, especially women over the age of 50. With few developmental disabilities nurses moving from facility-based models to community-based service models, there is a significant loss of stability and continuity in the provision of care by experienced DD nurses for people with disabilities. Community health care is ill equipped and ill trained to accommodate the specialized needs of developmentally delayed women, particularly those who are over 50 years of age. The risk to this population of having treatable cancers not identified early enough to be effectively treated is very high because standard screening protocols often are not followed. Developmental disabilities nurses must not be afraid to advocate for women they work with to ensure that they are receiving appropriate cancer screening in the community.